Two years ago today, I broke our silence and shared Marley’s official diagnosis. This day carries big emotions and a lasting memory for us.

For the 300 million people worldwide living with a rare disease—including Marley—every day is a fight for awareness, research, and better treatment options. But rare doesn’t mean alone.

We found hope the day of our diagnosis when we locked hands with The Rory Belle Foundation. I can’t love on them enough. Without them, we never would have applied for Marley’s individual medicine program through the incredible n-Lorem Foundation. Because of these amazing organizations, we feel less alone. Knowing others are fighting for Marley has helped carry the weight of this journey.

🔹 A disease is considered rare if it affects fewer than 1 in 2,000 people.

🔹 There are over 7,000 rare diseases, yet so many remain undiagnosed for years.

🔹 1 in 20 people will experience a rare disease in their lifetime, but most face delayed diagnoses and limited treatments.

Marley’s journey with NARS1 is just one of thousands of stories.

Thank you for following Marley and her groundbreaking journey toward treatment and hope! ✨

📸: @therorybellefoundation